Rare Disease Day special episode: Reclaiming the rare disease patient’s voice
- Presenter: Aparna Krishnan
Contributor
Jayne Spink, Nicola Whitehill and Danielle Myers
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Jayne Spink, Nicola Whitehill and Danielle Myers
In this Rare Disease Day special episode, we focus on the impact of COVID -19 on rare disease patients. Some of the key challenges for patients during this pandemic include disruption in their access to treatments, struggle to continue participation in clinical trials, lack of access to vital equipment such as PPE (Personal Protective Equipment) and also to healthcare personnel. We speak to Genetic Alliance chief executive officer Jayne Spink, patient Nicola Whitehill and Danielle Myers, mother and carer of patient 10 year old Dylan Myers.
Contributors: Jayne Spink, Nicola Whitehill and Danielle Myers
Producer: Aparna Krishnan
More information on :
Genetic Alliance can be found at https://geneticalliance.org.uk/
Nicola Whitehill’s blog: https://blog.raynaudsscleroderma.co.uk/2017/04/scleroderma-raynauds-rare-disease.html?m=1
Dylan Myers’ story: https://m.facebook.com/dylansstory/ and https://www.treeofhope.org.uk/dylansstory/
